Tuesday, February 8, 2011

Is My Child Ready for Summer Camp?

Gail Stein, MSW
Social Worker, Center for Autism Research

Whether or not to send your child to summer camp is a difficult question for every family. This question is compounded when your child has autism.   On one hand, summer camp can provide a child with opportunities to discovery new things, participate in activities, and make friends from different places.  On the other, you can’t help but ask yourself if he or she ready for camp life. You may be thinking about how anxious your child becomes when he is not around familiar things. Or that he thrives on his routine. And what about the fact that he only eats white foods?!  Should you push your child out of the nest and allow him to fly, or keep him home, safe, protected, ensuring that no imagined catastrophes even have the chance to occur?

My 20 years of experience as a social worker has led me to see first-hand the camp experiences of kids who have autism. I have observed that kids thrive on opportunities to develop connections in new situations, with new people, with new friends – even for short periods of time.  Adults thrive on opportunities to have their children in safe, trusted environments for short periods of time (a weekend, a week, or a couple of weeks). Families do well when they have breaks from one another.  After a short or long stint away from home, kids and adults alike seem to come back to their familiar routine refreshed, renewed, and somehow different.  

But how does a parent develop the courage and strength to “let go”?

First thing – choose the camp you trust.  Valley Forge Educational Services recently held a fair connecting families with camps in Philadelphia and the surrounding counties that are known particularly for their ability to accommodate children on the autism spectrum; their Special Kids Camp Directory can be found here. When looking at camp information, consider your child’s likes and dislikes. What tickles your child? What are those things you wish you were able to provide and /or expose him to? Perhaps that’s horseback riding, hikes in the woods, toasting marshmallows over a fire, participating in a theater project, or daily swimming. Or maybe it’s more specialized, like a camp that offers cooking classes, emersion in a foreign language, video production, or sports.

Once you decide on what type of camp may best suit your child, schedule a visit to the camp. During this visit, you should plan to meet the administrator, director and any other staff available. These will be individuals responsible for your child’s safety, program, and good time at camp.  Here are some questions to ask during your meeting:

What are their credentials?  How long have they been at the camp?  Are they responsible? Are they capable? Do you like them? Do they know how to have a good time? What's the staff-to-camper ratio? How old are the counselors and where does the camp recruit them from?  How many counselors return from the previous year? What percentage are new staff? What kind of training is provided for staff? If your child needs a special diet, can the camp provide appropriate meals? If not, can you provide food for your child? Do the counselors have first-aid training? What kind of medical staff is available in the infirmary and during what hours? Can the staff administer any medications your child needs? How are behavior problems handled?  Are they willing to help you construct a behavior plan?

How are behavioral and disciplinary problems handled?
This is where the director’s philosophy comes through loud and clear. Positive reinforcement, assertive role-modeling, and a sense of fair play are generally regarded as key components of camp counseling and leadership. Rules are necessary in any community, and the disciplinary approach taken should be reasonable and well-communicated. Does the staff have the training to motivate positive behavior and the resources to get help from supervisors who are professional educators? Do counselors understand concepts about boundaries and developmentally appropriate behavior? Are they equipped to provide natural and logical consequences, where appropriate, to emphasize children’s ability to develop resilience and decision-making skills?

How does the camp handle special needs? Is the camp prepared to provide for special needs? If your child has special requirements, ask the camp director about needed provisions and facilities. Are there nurses on staff? A health center? What are the protocols if a child is injured or ill? Are special foods available for campers with restricted or special diets?

How does the camp handle adjustment and separation issues? 
Is the camp prepared to work with your child if there are adjustment or separation issues? Who are these people, and what are their credentials? Will the director keep you informed of your child’s progress if this occurs?

Although you can get some of this information through phone calls, emails, brochures, and websites, I recommend visiting the camp. You can talk to the director, visit the site, and get a comprehensive picture of where your child will be. The best way to get a real feel for the camp is for you and your child to visit it together.

Just remember that whatever the special need, there's likely a camp out there to suit your child. With some research and understanding between you, your child, and the camp director, your camper-to-be can have an unforgettable summer.

Trying to Understand the Causes of Autism

Craig Newschaffer, Ph.D.
Professor, Drexel University School of Public Health
Primary Investigator, EARLI Study
Reprinted with permission from Special Families Guide

It was a notable year for autism on screen. Two decades removed from Rain Man, a major studio released a film featuring a protagonist with autism. The movie Adam took the well‐trod cinematic road of probing a relationship between twenty‐somethings in New York City, only this time one of them had Asperger’s syndrome. In February HBO premiered a biopic on Temple Grandin, a university professor with autism whose life and world‐view have already inspired the millions who have read her books. The fictional Lisbeth Salander, eponymous heroine of The Girl with the Dragon Tattoo which is now gracing art houses around the country, has Asperger’s Syndrome and a counterculture edge both of which she deploys freely in solving a forgotten string of gruesome murders.
Given all the recent celluloid attention devoted to autism, one may wonder whether we are already well‐enough aware. Unfortunately, in the area where I spend my days – the science of trying to understanding autism’s causes ‐ we still remain very much in the dark. Indeed, autism remains a growing public health epidemic.
One thing we do know is that autism is strongly influenced by genetics and we even have some clues about particular genes likely to be involved. But the genetics of autism are far more complex than first imagined. No single common gene by itself causes autism – individuals with autism probably carry many different combinations of multiple genetic mutations. Some of these mutations are inherited, but others are new ‐ appearing for the first time in affected individuals while completely absent from their parents’ genomes. A portion of autism’s genetic risk may not even be carried in the standard DNA alphabet – a newly discovered system of DNA on/off may also be commonly involved. And then, at least in some cases, genetics may only come into play by making the brain of a developing fetus, baby, or child more susceptible to the influence of some exposure in the environment.
Important investigations of the influence that environmental exposures, like infections and chemicals, may have on autism risk have really only recently begun in earnest. The Early Autism Risk Longitudinal Investigation (the EARLI study), which my colleagues and I launched last summer, is designed explicitly to explore environmental influences on autism risk while acknowledging the importance of genetic susceptibility. The study is nationally coordinated by the Drexel University School of Public Health, and includes participating institutions in Baltimore and northern California. In EARLI we will follow over one thousand mothers of young children with autism from the start of a subsequent pregnancy to the time the baby is born. We continue following the new baby through its third birthday – all the while collecting comprehensive information on a wide range of exposures and assembling genetic data from the family.
So, while the movie of autism’s causes remains very much the mystery story, there are encouraging plot points. Investment in autism research has increased markedly – in fiscal year 2008 the federal government committed nearly $120 million dollars to autism research, and then added another $85 million through the economic stimulus. As a result, a number of large, comprehensive studies investigating the complex causes of autism, like the EARLI Study, are now underway. What we ultimately learn about causes will be invaluable in guiding next generation strategies for minimizing impairment and maximizing potential for individuals with autism.